Which stage does this sound like?

[ayalil]

Hi,
I was wondering if I could have some advice.
My mum is 64 and was diagnosed with Alzheimer's 4 years ago, although symptoms were present for up to about 2 years before that. I am 24 and caring for my mum with my dad.
If I list my mum's symptoms I was wondering if I could get an idea of the stage it sounds like she is at? I am sort of at the point where I want this horrific disease to hurry up and take her.
Her symptoms:
No short term memory- at all
Also is losing long term memory quite rapidly
Can't really form a sentence any more- can't find words
Very confused in terms of train of thought- will go off on a tangent.
Sometimes thinks I am my sisters/my sisters are me
Thinks her husband is her dad
Doesn't remember her parents have died
Extreme agitation- cannot sit still for longer than 30 seconds
Aggressive, and thinks we are angry with her/thinks we don't want to look after her
Talks about dying quite a lot
Thinks most people are angry with her
Can no longer wash herself properly
Can't use the toilet alone- won't wipe, wash hands, flush etc
Won't eat (yesterday had a quarter of a sandwich all day), drinks a lot of water
Undressing randomly and inappropriately
Cannot dress herself properly
Etc, etc, etc

What stage does this sound like to anyone? And how long do you think this may carry on? I know everyone is different, but I am desperate.

Thanks in advance.

 

[marionq]

It is obviously quite an advanced stage but I am informed it is this middle to last stage which can go on for many years. Because I go to a lot of groups with my husband I see people at a great variety of stages and it s not always those who are most severe who pop off first if you will excuse the expression.

I think you have to accept the stage you are at and get all the help you can both in terms of care and medication for things like agitation and sleeplessness.

 

[ayalil]

I'm finding this so difficult and feel completely pathetic. I see others who are caring for someone alone and I am rubbish at this.
Thank you for your reply. This disease is so cruel


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[Spamar]

No, Ayalil, you are not rubbish! Each persons dementia develops differently and Carers are all different. If anybody had told me when OH was first diagnosed what I would have to cope with in future years, I would have laughed at them! Truly impossible! But you get used to it. Even so, everyone has their tipping point. I though mine would be poo! It wasn't, it was the sheer impossibility of picking him up when he started falling.
Don't berate yourself, I guess you are doing as good a job as any of us!

 

[DMac]

I'm finding this so difficult and feel completely pathetic. I see others who are caring for someone alone and I am rubbish at this.
Thank you for your reply. This disease is so cruel


Sent from my iPhone using Talking Point

Ayalil, no, you are NOT being pathetic!

I wonder if what you are experiencing is more like a feeling of powerlessness? It's the cruel nature of this illness that it gradually robs the one we love of their faculties, and mostly, all we can do is stand by and watch. That is a horrible sensation, and one which I feel I can never get used to, as I, too, watch my Mother-in-law slowly deteriorate.

I am absolutely sure that you are not rubbish at caring. Example: you have articulated very clearly the symptoms your mum is experiencing. Understanding a problem clearly is a major step towards resolving it. Perhaps you could print off this list, and show it to your mum's GP? That might set in place something that s/he can do to to help. Sorry if this advice is not helpful, but I just wanted to reassure you that you are doing a great job, even if you don't feel that you are right now. Take care. xxx

 

[Bill Owen]

Dont knock you self

hi,
i was wondering if i could have some advice.
My mum is 64 and was diagnosed with alzheimer's 4 years ago, although symptoms were present for up to about 2 years before that. I am 24 and caring for my mum with my dad.
If i list my mum's symptoms i was wondering if i could get an idea of the stage it sounds like she is at? I am sort of at the point where i want this horrific disease to hurry up and take her.
Her symptoms:
No short term memory- at all
also is losing long term memory quite rapidly
can't really form a sentence any more- can't find words
very confused in terms of train of thought- will go off on a tangent.
Sometimes thinks i am my sisters/my sisters are me
thinks her husband is her dad
doesn't remember her parents have died
extreme agitation- cannot sit still for longer than 30 seconds
aggressive, and thinks we are angry with her/thinks we don't want to look after her
talks about dying quite a lot
thinks most people are angry with her
can no longer wash herself properly
can't use the toilet alone- won't wipe, wash hands, flush etc
won't eat (yesterday had a quarter of a sandwich all day), drinks a lot of water
undressing randomly and inappropriately
cannot dress herself properly
etc, etc, etc

what stage does this sound like to anyone? And how long do you think this may carry on? I know everyone is different, but i am desperate.

Thanks in advance.

hi im bill just been throutgh all of this my self.sorry im dislx so bare with me on this. Lost my wife in march this year . Yes you are at a leat stage . But dose not mean it will be over soon this can go on for a long time yet belive me .my wife had lewy body dem. 5 years . Now pass away. About you self do not knock you self this is very hard to del with .any one who looks after some with this horrrrrrbl illniss. Is a big man in my book .be proud of you self yonge man. Take advice from socle /worker. Care /talke to some one how you feel / you have not been train up for this . You will lean on the way . But you will feel very proud of you self .that you are helpping you mam / who by the way did not ask for this to happen to her .its not her fault its the bloody illnisssssss.
So be strong / do you best /love her / has she would love you if you was ill.bill

 

[Mary Grand]

Late stage

Hi,
I was wondering if I could have some advice.
My mum is 64 and was diagnosed with Alzheimer's 4 years ago, although symptoms were present for up to about 2 years before that. I am 24 and caring for my mum with my dad.
If I list my mum's symptoms I was wondering if I could get an idea of the stage it sounds like she is at? I am sort of at the point where I want this horrific disease to hurry up and take her.
Her symptoms:
No short term memory- at all
Also is losing long term memory quite rapidly
Can't really form a sentence any more- can't find words
Very confused in terms of train of thought- will go off on a tangent.
Sometimes thinks I am my sisters/my sisters are me
Thinks her husband is her dad
Doesn't remember her parents have died
Extreme agitation- cannot sit still for longer than 30 seconds
Aggressive, and thinks we are angry with her/thinks we don't want to look after her
Talks about dying quite a lot
Thinks most people are angry with her
Can no longer wash herself properly
Can't use the toilet alone- won't wipe, wash hands, flush etc
Won't eat (yesterday had a quarter of a sandwich all day), drinks a lot of water
Undressing randomly and inappropriately
Cannot dress herself properly
Etc, etc, etc

What stage does this sound like to anyone? And how long do you think this may carry on? I know everyone is different, but I am desperate.

Thanks in advance.

My mother is what I believe to be end stage, but no one can seem to tell me that. I have talked with all her doctors. I finally decided to say that only God knows when her end days will be.

She does nothing but scream, undress, can no longer communicate, walk or take care of herself in anyway. She does not eat. She does not sleep any more than 15 or 20 minute increments.

All of this escalated after her falling and breaking her hip and going under anesthesia. Her dementia was bad before, but now she is pretty much gone.

It is hard to see her this way and makes our visits very difficult.

I pray for a cure some day and I will pray for you too. Be patient.

 

[Marmotta838]

Medications

Hi all - is there any medication which helps with all these symptoms? Is there anything to make them feel a bit more settled? I know there's medications to help me feel more settled and I'm on way too many But what about them? What are some good meds?

 

[smartieplum]

Hi,
I was wondering if I could have some advice.
My mum is 64 and was diagnosed with Alzheimer's 4 years ago, although symptoms were present for up to about 2 years before that. I am 24 and caring for my mum with my dad.
If I list my mum's symptoms I was wondering if I could get an idea of the stage it sounds like she is at? I am sort of at the point where I want this horrific disease to hurry up and take her.
Her symptoms:
No short term memory- at all
Also is losing long term memory quite rapidly
Can't really form a sentence any more- can't find words
Very confused in terms of train of thought- will go off on a tangent.
Sometimes thinks I am my sisters/my sisters are me
Thinks her husband is her dad
Doesn't remember her parents have died
Extreme agitation- cannot sit still for longer than 30 seconds
Aggressive, and thinks we are angry with her/thinks we don't want to look after her
Talks about dying quite a lot
Thinks most people are angry with her
Can no longer wash herself properly
Can't use the toilet alone- won't wipe, wash hands, flush etc
Won't eat (yesterday had a quarter of a sandwich all day), drinks a lot of water
Undressing randomly and inappropriately
Cannot dress herself properly
Etc, etc, etc

What stage does this sound like to anyone? And how long do you think this may carry on? I know everyone is different, but I am desperate.

Thanks in advance.

Oh honey. Your mum is too young for this and you should be out enjoying life. This disease is a monster. The confusing people is the thing I find really hard.

 

[CeliaThePoet]

I hope this fact sheet will help: https://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=101

Some describe stages early, middle, late, and some use a 1-7 scale. On the latter, I'd say she is a 6. See here: http://www.alzinfo.org/clinical-stages-of-alzheimers

As for how long, impossible to say. When my mother was diagnosis, my own doctor said: it's not a sprint, it is a marathon. As heartbreaking as it is, plan for ears so that you know you must pace yourself, have regular breaks, and not only operate in crisis mode. This was very hard for me to learn. Seven years in, I think I may just be getting it.

 

[Beccaj]

Hi Ayalil, Sadly, I can't help with a diagnosis but please take heart in the fact that you are not alone. As I've recently found, there is a lot of moral support on the forum .... we're here to help each other - as coping is incredibly hard, especially when you're so young. Please do contact your mums GP and the Alzheimer's Society, both of whom can advise you on coping strategies and support options to help your situation. Sending you a big hug - stay strong and take care xx


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[jah66]

Hi Ayalil, I just wanted to say that I am sure you and your dad are doing a really good job and it is really tough to be a carer. I don't know whether you have managed to tap into all the practical and financial support available, I know you can't wave a magic wand but some things might help you and your dad a little. Even if you have already had adult social care do an assessment for your mum, it sounds like there are changes and she may need a reassessment. They can help with a package of care, which would relieve you of some of the extra work (washing and dressing her for example) or get some replacement care, someone to come in and sit with her while you go out for a break, appointment, shopping or whatever if she cannot be left alone. Also you and your dad are both entitled to carers assessments and even a small budget if necessary. This is not means tested, so if you are struggling, for example with cleaning or gardening, you could get funding for this. Mum can get Attendance Allowance at 65 (I think its PIP before that. AA is £80 pw for the higher rate to help look after her, and council tax rebate following a dementia diagnosis. If you have a carers assessment they can tell you where to get advice about benefits. My other advice is to get a continence assessment through the district nurse if she needs pads and also, urine infections can cause confusion and poor mobility, so it is worth getting it checked.
You may have done all this already, but if not, you can self-refer for these things.
Take care, all the best.

Hi,
I was wondering if I could have some advice.
My mum is 64 and was diagnosed with Alzheimer's 4 years ago, although symptoms were present for up to about 2 years before that. I am 24 and caring for my mum with my dad.
If I list my mum's symptoms I was wondering if I could get an idea of the stage it sounds like she is at? I am sort of at the point where I want this horrific disease to hurry up and take her.
Her symptoms:
No short term memory- at all
Also is losing long term memory quite rapidly
Can't really form a sentence any more- can't find words
Very confused in terms of train of thought- will go off on a tangent.
Sometimes thinks I am my sisters/my sisters are me
Thinks her husband is her dad
Doesn't remember her parents have died
Extreme agitation- cannot sit still for longer than 30 seconds
Aggressive, and thinks we are angry with her/thinks we don't want to look after her
Talks about dying quite a lot
Thinks most people are angry with her
Can no longer wash herself properly
Can't use the toilet alone- won't wipe, wash hands, flush etc
Won't eat (yesterday had a quarter of a sandwich all day), drinks a lot of water
Undressing randomly and inappropriately
Cannot dress herself properly
Etc, etc, etc

What stage does this sound like to anyone? And how long do you think this may carry on? I know everyone is different, but I am desperate.

Thanks in advance.

 

[Cat27]

Welcome to TP Jah66

 

[Lets_Stop_Time]

Sending Love

The stage your mum is at was the stage we looked into carers. We got to the point she needed 24/7 supervision as she had a seizure and a fall and was hospitalised. We got her into a care home within days.
My father in law passed years ago and my BIL thought 2 x 15 min visits from a carer team and him feeding her microwave meals and cup a soup and locking her in the house was an acceptable form of safeguarding her and no way we were letting that carry on.
If my FIL was still here I am sure we would have coped a while longer.
After the stage your mum is at for my MIL in the space of 9 months she's now unable to walk, talk, feed herself.
Everybody is different and your mum may stay this way for a while.

Do you know what she may have wanted in terms of care?
My MIL didn't want to go into a home but in the end we couldn't cope with her care and BIL certainly wasn't coping (he kept her incomtinence and other things secret from us) no idea why.

 

[netsy22]

Sympathy and support

You are so young to have to cope with this. Your poor mother is far too young also to have this dreadful disease in such an advanced way. I believe that the younger the onset, the quicker it progresses. Have you considered a care home? If not, are you getting all the support from SS, carers groups, allowances etc, that your mother (and you and your father) are entitled to? You need to be living your own life at your age.